My Story: The Dark Side of the Anti-Opioid Campaign

My Story: The Dark Side of the Anti-Opioid Campaign

I suffer from Ehlers-Danlos Syndrome, a congenital connective tissue disorder, of which tissue fragility and chronic pain are common symptoms.

I have consulted 22 different healthcare professionals about my pain. I have tried traditional physical therapy, aqua therapy, postural therapy, acupuncture, epidural steroid injections, rolfing, yoga, meditation, magnets, diet, supplements, ice, non-steroidal anti-inflammatory drugs (NSAIDs), and a variety of other non-opioid medications with little success.

Chloe Mathews

Chloe Mathews

For me, opioid pain relievers have provided a cheap and effective way to regain functionality after lengthy periods of disability. In short, opioids control my pain, which allows me to sleep restoratively, allows my body to heal, and allows me to more fully participate in life rather than be confined to bed with debilitating pain.

These medications have been used successfully for centuries to alleviate pain. However, due to a persistent barrage of misinformation, opioids have recently become conflated with addiction in the minds of doctors as well as the general public.

The result is a near universal knee-jerk reaction to condemn any pain sufferer using opioid pain relievers as a suspected addict. This defies the evidence. According to the National Institutes of Health, a mere 5 percent of medical patients taking opioids as directed for a year end up with an addiction disorder.

I have never had a substance abuse problem. However, I have often been denied access to needed pain medication because my doctors were intimidated by overzealous regulators or because the doctors preferred to perform more invasive (and lucrative) “interventional” treatments.

“The DEA is cracking down on doctors who write too many opioid prescriptions,” one doctor explained as she denied my request for medication. “I have kids in college. I cannot afford to lose my medical license.”

“I’m only a primary care physician,” another doctor explained. “You need to see a pain management specialist.” He did not provide a referral.

“I am not a prescription re-filler,” the pain management specialist said scornfully. “I specialize in surgically implanted neurostimulators. I do not want patients like you.” He referred me to the Internet.

Unfortunately, my experiences are far from unusual. Tens of thousands of pain sufferers are subjected to similar prejudice and ill treatment every day. Do not imagine that this problem does not affect you. It affects us all, because through accident or other unforeseen circumstance, anyone could become a pain patient at any time.

Please join hands and do something before it is too late.

12_7.jpgChloe Mathews lives in California. She suffers from Ehlers-Danlos Syndrome, a congenital connective tissue disorder, which has left her with a series of disabling back injuries. Once an avid hiker and yoga practitioner, she is striving to regain her active lifestyle.

National Pain Report invites other readers to share their stories with us.

Send them to editor@nationalpainreport.com

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represents the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

Authored by: Chloe Mathews

There are 26 comments for this article
  1. Joe at 3:24 am

    I have what they call “fibromyalgia”. I became the way I am after exposure to toxic mold. Gabapentin did nothing but make me more sick. I also had unidentified neck and back problems verified by nerve conduction tests. My rheumatologist has tunnel vision, and can’t think outside the box he was trained in. He became so frightened by the DEA that he sent a lot of his patients to pain management or reduced their meds. I wasn’t one of them but my pain was not controlled so I volunteered for referral. Good move for me. However once I went to the pain clinic I began experiencing discrimination by CVS pharmacy which I’ve used for years. I began being looked at as and treated like a criminal-addict. The last straw was when they supposedly ordered my opana ER and took five days to get it but when I went to pick it up they said it didn’t come in. Keep in mind by that time I was in full withdrawal from fentanyl patches! I had the worst flare I’ve had in 4 years. I did have my instant release meds though, but still, I was used to 24 hour relief from the patch. They called around and found a pharmacy that had opana and they filled it. But they were about maxed, if not maxed out on oxycodone patients. That pharmacist told me the pharmacies all lie and say they don’t have it or don’t carry it and chain store pharmacists are taught by corporate to do this. He had empathy after asking me some questions about my situation. Fair enough and reasonable. He then commented that it’s a quality of life issue for me. Very refreshing that he understood my problem. As an engineer with a M.Sc., I can’t afford to be sick. I want to work and be productive. Pain meds let me do that, and he understood it. We need more like him. In defense of one CVS pharmacist, she went off to me about the DEA angrily saying how they are causing the epidemic of opiate fear in doctors and pharmacies. The other gal there was the one treating me like I was sub-human for taking pain meds. At least after I went to a PM doc. I told my PM doc about my experience and he referred me to a mom and pop shop that – he asked if I ever tried them and told me to go there. I did and they filled it with a twinkle in their eye. They said we take care of his patients. They didn’t even flinch that I filled it 5 days early. I did so because of the experience with not getting the opana and coming off the patch. I was in bad shape. They blew the CVS lie out of the water that my insurance wouldn’t pay for it early. When I say early at CVS I mean the day before it was due so I could maintain my schedule without running out, taking off work, and waiting until they opened to get my meds. The girl was lying to me at CVS. I was livid about her deception. The prior month to the opana debacle she refused to fill my script when it was due because she miscalculated the time because there are 31 days in some months as you know! I was afraid to go to another pharmacy not wanting to break my doctor’s rules. But, now I will go only to the place he referred me to, and I expect I won’t have any more problems. I go today to get my refills. I can rest easy knowing they won’t treat me like scum there for comitting the “crime” of managing my pain.

  2. BL at 8:45 am

    Tina, Thanks for sharing that. I just wish I knew why drs feel the need to lie to their patients. On the other hand, the drs usually aren’t the ones who write these contracts. But, it would be nice if drs cared enough about their patients to be sure they weren’t misinformed.

    Laws are open for the pubic/everyone to read word for word. They are enforced by law enforcement and the courts. Drs office policies are not for the public/everyone to view. They also aren’t legally binding. If you or your dr break the contract, there is nothing either of you can do from a legal standpoint to each other.

  3. Tina at 9:39 pm

    BJ in response to what you said about checking the law, the first time I saw the pain contract it did say that is was the Dr.s policy but then they reprinted it to reduce it to 1 page and this time it said such and such law enacted by the DEA was making Dr.’s limit all patients to a certain amount of opiods per month. Although, I have yet to found anyone that I know who is a pain patient here in my state having to sign a pain contract saying it is law or the DEA but come to think of it, it must not be law because at the end he did say if you can’t abide by these rules then feel free to find anoter pain management dr., I am just scared that another PM would be even worse or not believe in prescribing these meds. altogther and since I have been on the saame ones for so long I don’t want to go back to the beginning trying every other drug only to find they don’t work while I am left to deal with the pain without any form of relief. thanks for your comment bj

  4. BL at 7:48 pm

    Tina, check your state laws for any new laws regarding these meds. There are No New Federal Laws. You also may want to see if your insurance company has any new policies govering this. For some reason most drs are telling their patients that there are new laws, when there aren’t any. There is a difference between a state law or federal law and a drs policy or an insurance companies policy. Federal Laws regarding Prescriptions are written in the Title 21 of the Code Of Federal Regulations, these are often referred to as DEA Laws.

  5. Tina at 10:08 pm

    Kristina Schwende I agree with your post we do need to fight back against the abuse of us as pain patients but as you said we fight everyday with the pain to the point we can’t fight for our rights to be treated better and it seems none of us know what to do to fight this. Surely there is someone in one of the groups that is into politics or knows someone that can guide us on how to fight it.

  6. Kristina Schwende at 5:33 pm

    This kind of patient abuse (and it is abuse) must stop! It is criminal to treat people in such a manner, especially given many of us are too disabled to fight for our rights. I wish I had the answer, but I do know that we need one loud voice. There are so many different pain organizations, support groups, advocates, etc. We need to somehow join forces. This abuse needs to be made public in all its gory details. How can we do this? I honestly don’t know. I just know that we have to do something because, as has been clearly pointed out, this will affect all of us in one way or another.

  7. Tina at 1:09 am

    I just went to my PM and now due to some new law I had to sign a new pain contract but this one now only allows a certain amount of opiods per month so in other words we are now all be lumped into the same amount of pain apparently since we now all can only have the same amount per month. So guess we all have the same amount of pain that can be controlled by this amount of medication. I think this another stupid thing they are doing to us assuming that everyone’s pain can be controlled by the same amount of medication. I have been on pain medication for 12 yrs. so my tolerance of couse is higher than someone who is just starting this endless pain journey but that doesn’t seem to matter. It isn’t like I had a life before this really but now it will only lower my quality of life even more and have me in more pain more of the time. In 12 yrs. I haven’t overdosed on my meds. so why do they think I would in the next 12 yrs. How much worse is this going to get? It won’t be long before we will not even be able to get pain medication at least not through legal channels because it doesn’t seem to have stopped the addicts from getting what they want just stopped pain suffers from getting much need relief.

  8. Ann at 7:46 pm

    I am a grandmother, a responsible human being. I have never committed a crime. I must say that being forced to go to a stranger and be treated like a criminal just to get my pain medicine was the most humiliating experience in my life. I had to submit to a urine test. That was OK, but the PA tried to force me to choose between the epidural and the patch. I refused both. I have tried the epidural with life threatening results. Every patch I have ever worn has caused a bad skin reaction. She finally agreed to start me on a long lasting pain pill at a very low dosage. It took almost a week to get the prescription filled. Let’s just say that the stress and change in dosage has really caused my fibro to flair up. I think it is criminal to put a law abiding grandma through all this, while the federal government completely ignores the state of Colorado breaking the federal law by selling pot for recreational use. I wish our state allowed this maybe it would help my pain and reduce the stigma of needing pain medication. I agree that the pain and embarrassment of having to feel like a criminal just to get some relief will make a lot of people choose to end their lives.

  9. Melisa H. at 11:20 am

    Mavis-thanks for distinguishing between dependance and addiction!! I have someone in my family who is a Nurse Practitioner and she’s made statements that I’m addicted-and now I’m so resentful towards her I can’t be around her. I’ve been on opioids for 5 years and she has no idea what I go through on a daily basis. Just another person I’ve cut out of my life! Good riddens!

  10. Celeste Cooper at 10:42 am

    How can we find a way to scare people straight on understanding the stories for opioids providing quality of life?

  11. Brenda Alice at 3:47 pm

    I was also a nurse for 20 years with a job I loved. Reading today from Pharmacist Steve led me to know that this will get worse. Mass. Blue cross has decided to limit schedule medication to 15 days supply and require special approval? Then followed link by pharmacist Steve and find the governor Halsom has inacted a 17 point Bill to limit control medication to patients. I can’t imagine that the disabled are being discriminated against and forced to suffer. Why not focus on the dealers and meth/ heroin problems. They are the ones committing the crimes.

  12. Gina at 11:21 am

    I suffer from chronic back pain. I can relate to the negative experience you all go through. It’s awful! The doctors have had a very difficult time diagnosing me because I also have a heart condition which led to a pacemaker and defibrillator being inserted. So, I can’t have an MRI. I have gone to my pain Dr barely able to walk and in tears. He says well have you started to decrease your pain meds? Now
    I made the appointment because the pain was worse! He knew this. Then he said I see no medical reason you should have pain. Not let’s run some tests or let me call your surgeon let’s put our heads together. So I called my surgeon. He did run test and found I needed surgery. During this surgery he also found a benign tumor. The Dr said my nerve was as red as ketchup. I have been through so much with this back issue. It has caused severe depression because I’m slowly loosing my independence. The pain is intolerable at times. It hard to find a Dr who listens and doesn’t treat you like a drug seeking junkie. The solution is not removing pain meds from the market. It’s education to those who need it. Trust I can’t think that anyone would want to live the life I do.

  13. Chloe Mathews at 9:34 am

    Thank you all for your kind words and wonderful comments. Clearly, this problem is massive and, as many of you pointed out, profoundly degrades the patients’ quality of life. Even tragically leading to suicide in some instances.

    For there to be any hope of change, we need to act together, and act now. Stories about the tragedy of addiction are flooding the media. Now they need to hear from us.

    In addition to the wonderful work being done here by National Pain Report, pharmacist and pain advocate, Dr. Jeffrey Fudin has provided a venue for us to tell our stories in a coordinated manner. I urge you to join me in speaking out there as well. The link is: http://paindr.com/patients-share-humanistic-side-of-living-in-pain-amid-lawmaker-opioid-hysteria/

    I hope you will also post links to National Pain Report in the comments about stories of addiction as well as on Facebook, Twitter, etc.

    Thank you again for your words of support.

    Gentle hugs to you all.

  14. Chris Lynch at 9:16 pm

    It wasn’t until I went through Kaiser’s grueling pain management program and was seen by their program’s doctor that I have been able to easily access the opiate drugs needed to control my episodes of spinal nerve pain. Without them, I was a frequent visitor to the Emergency Room. Because I only require them when the episodes occur, I am fortunate not to need too many. However, I know many others with chronic pain with unfixable conditions who have very diffficult struggles to get the daily pain relief they need. For some reason, doctors and society as a whole choose to believe that people in pain enjoy their pain and the drugs needed to control it. I just wish they could walk in our shoes for a while. The laws would change in a big hurry!

  15. Stephen M at 4:24 pm

    I have been telling to find a pain doctor for years (since my oncologist & pain doctor abandoned me because of the crackdown on doctors).

  16. Alison Tartaglia at 7:52 am

    My husband and I moved to WV about two years ago from outside of philadelphia. Since then he has had to travel over five hours one way to continue to see his pain specialist (who he’s seen for well over 10 years now) because we have been told “no one in the state of WV will write for those medications”. He has congestive heard disease that has gotten progressively worse and the travel has now become problematic and STILL no physician is willing to help. It took him almost 20 years to find a combination of medications that increased his quality of life and helped him to be a functional person. The suggestions that I have gotten of “switching meds” or putting him in the hospital and detoxing him and “seeing what his pain level is” are absolutely not acceptable!!! I am also a MS patient and I have been incredibly lucky regarding my pain, but watching what he is going through scares me to death! My heart goes out to pain sufferers, especially those who found the combination to manage their pain and are being harassed or mistreated by the medical community. PLEASE KEEP TELLING YOUR STORIES!!! They need to know….and I will continue to tell his for that same reason….God bless

  17. Christina at 7:43 am

    What happen to our choice what to put in our bodies? Now that opioids have a bad reputation it’s difficult to find anyone to treat you. With that bad reputation now family members and friends think patients who take them are junkies and addicts. Chronic pain patients are depressed because they do not have a normal life and in pain add this to it and it can have some deadly effects. I see and hear patients being pushed to go under the knife to see if they can be fixed. If they don’t then they will lose their medications. This is wrong and inhumane and a patients should not be forced to that. There are just as many surgeries that go wrong then the ones that go right. They put a patient in more pain then when they started. Some patients CAN NOT get their medications so they do surgeries in desperation and it is wrong. It’s not right for a pharmacist to deny pain medication because they do not have the education on diseases and injuries that help patients control the pain. We need REFORM on access to pain medications. If you have paperwork from testing, blood work, MRIs or surgeries you should not be denied by a pharmacist. This is something pain patients need to ban together on. If pharmacist DO NOT want to obtain more education then we need specialty pharmacies. Were they except insurances and do not charge ridiculous amounts for the medications if you don’t have insurance. If we don’t act now on this it will continue to be a problem with no end in sight. I’m only 36 years old and I have a lot of issues going on. Because of my age and that they can only see that I don’t walk normal I have this problem regularly. It’s not fair I’m treated this way. I didn’t ask for all the problems I have going on with my body. Patients do not get to choose what happens to them. I think a lot of people who are in good health don’t understand we are are going threw hell. Yet we are made out to be the problem and that were addicts..

  18. Nancy at 6:08 am

    Hi…I’m also an EDSer…just so you know, EDS isn’t congenital. Its genetic. There is a large distinction between the two terms. Congential is an issue, such as spina bifida or cleft palet that is damage that takes place during a pregnancy in utero.

    EDS is “heritable” or “genetic”, which means that it is an issue with DNA encoding for protiens or enzymes. Genetic mutations, whether heritable in nature or de novu (meaning, you’re the first in the family with the mutation) are a completely distinct diagnosis. I just wanted to give you a head’s up, because misinformation abounds, and you seem like the kind of person who would like to take a professional, intelligent stance with the proper terminology. 🙂 Best of luck to you.

  19. Brenda Alice at 12:17 am

    I am also a chronic pain patient that is 58. Without the narcotics I can’t beat the pain. I have several diseases without cure, only management. I do not know who is lying- the doctors,the pharmacists, the DEA? Right now I only care about the unfair suffering that is being caused because the games that are being played with the disabled at the bottom of the list. I can’t find a doctor to treat me as human or a pharmacy near my home to even order my medication. Forget the extra money that this costs and the burden on family/ friends which are very few because nobody wants to listen. I will beg now- please listen. To the sick, disabled, the elderly and the ones that need protecting against the discrimination. This could be you in the future. If I become a criminal then could I get attorneys to help? If I get arrested will my prescriptions get filled? They aren’t being done now locally because our tax dollars are being wasted by preventing prescriptions and generating more paperwork rather than investigation into dealers and generating more fear of the dear DEA. Have heard of 3 suicides this past week from Facebook from chronic pain patients that can’t cope anymore. NOT A CRIMINAL BUT WITH LESS RIGHTS.

  20. Melvis at 10:02 pm

    Awwwww…:{ …..I definitely do feel your pain my dear. After 2 back surgeries and being pretty much ostracized by most of my family, and my best friend, its completely puzzling to me why chronic pain folks are treated any differently than a diabetic or epileptic patient. Being a nurse, this condition has not only affected my personal life, but my professional life as well. I mean, what hospital would hire me while I’m taking this medications. And frankly, I’d be worried to work around the medications for fear if any did come up missing, I’d be the first person they accused. I am NOT an addict, I’m DEPENDENT. 2 very different things here.
    Now the doctor situation… My only recourse to that was to keep my private MD I had while I lived in Nevada, who isnt afraid to medicate someone when they need it, and I travel the 1500 miles one way to get the care I need.
    Something has to give here, but no one is listening to us….we are the throw away patients. So so sad….

  21. Tina Steelman at 8:27 pm

    Yes and it gets worse every day, my pain Dr. is now making us sign a contract where he will only give so many pain pills per month across the broad to every single patient as if we all have the same level of pain. I have had chronic pain for 12 yrs. have done injections, etc. which gave no relief and now they want to cut back my medication again even though I have been with him over 4 yrs. always had a clean drug screen etc. but now every person he sees gets the same amount. How stupid? We are all different and so is our pain. My life now is go to Dr., then pharmacy, then home, go to PCP dr. once a month, go to grocery store once a month. That is my social calendar my quality of life before he has cut them so guess once they are cut down I will have to for go the grocery store although living alone that might be hard to do. There is no quality of life for me. However, I know people who have no pain that get twice as much medication as I do and what do they do with them yeap sell them to other people it makes me sick that the ones who need it can’t get it but the ones that sell theirs seem to have no problem getting what they want. I don’t worry about the next 10 to 15 yrs. I worry about just the next year if it keeps going like it is.

  22. Kimberly Kay Miller at 4:33 pm

    The lack of adequate pain control due to the overreaching, cruel, and ineffective laws limiting opioid prescribing have cost chronic pain patients their quality of life, in fact, have cost many their very lives, having committed suicide as a result of their inability to stand the pain they’ve been forced to endure. These laws are also ineffective in their original design, to curb or stop completely drug abuse and overdoses. What has happened instead is what many who suffer from chronic pain predicted would occur.

    The drug addicts, which by the way ARE NOT CHRONIC PAIN PATIENTS, have switched to other drugs, mainly heroin, and are still abusing and still dying of overdoses of drugs, now they are just not coming from known sources. No the drug of choice is a big, hairy monster that never has the same ingredients, potency and is the most addictive thing to hit the streets yet.

    What has been accomplished, then? Some politicians got a feather in their caps and called themselves heroes and DEA agents get to keep their jobs because now they are after heroin dealers and users instead of doctors and pain patients. And something else very important was accomplished, chronic pain patients lost the ability to live their lives in any way that resembles normal. Now the simple, normal daily activities are major feats. But, nobody is going back and checking on their predicament. They are after all, just a bunch of drug addicts, right?

    See Link for the following page:
    “Opposition to Kentucky HB 1-Reform HB 217 aka “Pill Mill Bill”
    https://www.facebook.com/pages/Opposition-to-Kentucky-HB-1-Reform-HB-217-aka-Pill-Mill-Bill/595049517218134
    Kim Miller

  23. Gerard Hill at 3:00 pm

    I am currently experiencing this now with a combination of epidurals and the buprenorphine patches.Pain has been completely maintained for 6 months and they want to lower my pain patch and maybe get my fifth injection.After the FDA report on the injections,I feel the patches have been doing the job,without causing damage,a higher dose etc.We have a right to request what therapy is working for us.

  24. LarryK at 11:49 am

    I’ve run across the same reaction. I have small fiber fibromyalgia. The pain is 24/7, and has been since early 2006. It is intense. Without a combination of long acting morphine and gabapentin, I would not be able to function. From fall to spring, I have to take vicodin with those. The cold air adds another layer of pain in the skin of my legs on top of everything. I had a doctor (and I use that term loosely, which is sad because he’s a VA doc) tell me that anyone who takes more than 1 short acting pain med at a time is “after the high.” I’ve tried to explain that those who have a high, chronic, pain level doesn’t get the “high.” I’ve had docs tell me my pain is all in my head. I had a neurologist say “you have an aura of sadness about you.” Well no shit, I’M IN 24/7 PAIN.

    I’m sick of the know-it-alls. There is a difference. There is opiod addicts. Those who are addicted to the high, and to the feeling it gives. Then, there is opiod dependent. Those who are in need of them to function normally in society. Those who are trying to overcome the short end of the stick. They work hard to try and overcome what is afflicting them. They DON’T WANT TO BE ON THE MEDS, but don’t have a choice.

    I know I don’t want to be on that crap. I want to work. I wanted to stay in the US Air Force. I want to run and play with my 3 kids. I want to be there to teach them the usual dad stuff. It’s hard for me to tell them I can’t do something because it hurts. The heart break that comes with that statement is beyond words. I still do a lot of things that hurt badly. I pay for it dearly, in the way of crashing into tremors and high fatigue.

    STOP THE MISINFORMATION!

  25. Nicole at 11:26 am

    Chloe, thank you for writing this. I am at the moment, sitting in a doctor waiting office. I also have EDS and am in constant pain. My doctors are unable to fully control my pain thru any conventional method. I too have tried all of the recommended alternative therapies. I can meditate and get a little bit of pain relief. However, as soon as I stop the session, the pain roars back. This war on opioids scares me very badly. I can barely function now, what will it be like in 10-15 years with no access to much needed pain meds. I sincerelyfeel for the people who have lost loved ones to opioid addiction but I truly believe that if someone has an addictive personality, they will be addicted to something. If they can’t get pills, they will move on to whatever they can get. As a society, we should focus on providing real help for the addicts and not on persecuting people who are in pain.

  26. cyndiann at 10:25 am

    Thank you for writing this. The articles I’m seeing in the news only concentrate on how pharmacies are screwing us around and don’t talk about the doctors’ part in this mess. Just this morning I had a scare, wondering if I’d be left with no medication or would have to pay out of pocket because of a change in insurance. Much to my surprise the new insurance covered it and I got to save my stash money for something else.

    It is as if we are invisible. I’m tired of being under medicated and treated like an addict for wanting to be pain free enough to do normal every day things like clean my house. I can’t even dream about working or being social at this point. I have no life!